On Friday, Kaiser's interventional radiology department is named and said that an IR had reviewed my CT and PET scans, and failed to copy on that my tumor may also maximum attainable be biopsied with a over the correct-fine quality needle aspiration (FNA) with out risking hurt to the either the surrounding nerve bundles, or the shut by making use of cluster of veins and arteries. IR alternatively referred me to at least one in every of Kaiser's typical surgeons to effort a biopsy the historic now not odd method — slicing me open and taking a look to slice out a paintings of the tumor. How very 1950's, I concept. Maybe I'll see if the IR's at NIH or Hopkins are as much as the quandary. (NIH did a FNA biopsy in a approximately sector to go back back in September 2014.)
Today I met with Dr. Andrea Apolo and her crew at the National Cancer Institute at NIH's Bethesda campus. (dwelling internal the DC sector does have its advantages.) I am fortunate that I met Dr. Apolo at a BCAN social gathering in April 2012, simply weeks after my cancer first went metastatic. She has been a competent supply of wisdom, 2nd evaluations, and consolation ever since. She has urged me into two medical trials at the equal time as maximum of the time in search of my maximum reliable pursuits. She is an example of the utmost reliable category of public servant.
Here is the list of questions and notes that I geared up for our meeting:
Data re recurrence of mBC after immuntherapy-triggered reaction?
How without doubt is it that this mBC is an bodily mutation as than?
Will sequencing tumor tissue for neoantigens assist in cure preference? (PD ligand, CTLA-4 expression, HER2, infected TME, TSC1/2, the unique immune cytolytic gene signatures)
Kaiser IR is frightened of FNA. Can NIH do some other FNA? Or Betsy Plimack at Fox Chase https://clinicaltrials.gov/ct2/observe/NCT03291028
Does NIHs research of my historic pattern (9/5/14) updated any perception? (over the correct mutation burden, HER2+, PDL expression)
What are my maximum reliable cure selections?
Enfortumab Vedotin (Nectin-4 expression; Trial EV-201) https://clinicaltrials.gov/ct2/observe/NCT03219333
Dr. Apolo said that getting a tissue pattern by making use of approach of biopsy, then getting it sequenced, turned into the utmost reliable method to have in thoughts what turned into happening. They may compare it to my prematurely biopsy and take a look at whether it turned into an bodily mutation or in any respect new. She'll have the NIH IR's visible appeal at my scans and notice internal the pattern that they're prepared to are making an effort to do the biopsy. (She seemed horrified that Kaiser sought after to are making an effort to get to the tumor by making use of slicing me open.) She adopted that the mets grew at the equal time as I turned into off cure — I have now not had any nivolumab for about 18 months — and that there has been a probability that I would again reply to nivolumab. She moreover said that her cabo/nivo/ipi trial turned into designed for patients who had advanced at the equal time as on immunotherapy, so I failed to qualify for that trial. (Plus, the possibilities of issue outcome had been more beneficial than just nivolumab alone.) She typical how a bunch of patients who had lengthy prior off immunotherapy, then had a relapse, had again answered after they went to go back back on cure (even with the verifiable fact that the wisdom are still constrained.) Her suggestion turned into that, till the biopsy confirmed in any respect unpredicted, I ought to still resume nivolumab. She moreover said that it turned into now not urgent that I do so mechanically, as my mets gave the impression to be becoming specifically slowly.We parted along with her promising to get to go back back to me in a week or so. It turned into a over the correct-fine quality talk with.
I've had a bunch of time to copy on the news of the return of my cancer. I'm moderately surprised on how nonplussed I am. I've envisioned this shoe to drop for a bunch of time and now that it has, I've desperate that nothing has replaced. I had now not replaced my assumptions on how lengthy I would reside: I ought to still now not ought to still handle altered expectations, in view that method back I realized to enable go of any expectations. I maintain to reside one day at a time, giving by making use of motive why of God the two morning, and gratitude the two night time.